Gutted ....

Following my recent second appointment with Jon stone I have been left feeling gutted and totally bewildered . I accepted after first visit that I was diagnosed with fnd with gait issue , weakness on right side and disasociative seizures. I placed all hope in the second visit and that I would be seeing the best person to help me and treatment would begin. I can't begin to tell you how angry and disappointed I am that we just went over the same info from first meeting. I was told to go home do my homework , read the info on the website which I have done! Not to keep asking why and just accept that's how it is , some days I just can't cope with this and any progress is through sheer determination with no thanks at all to the medical profession. Seven months later I am no further forward and still receiving no treatment whatsoever apart from a few pills!

43 Replies

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  • So sorry to read this Ailsaw. What is happening about the clinical trials? I thought that would be some kind of treatment going forwards. I can't believe you've been sent home and told to read a website again with no other support or plan. Honestly... don't give up - there's UK FND awareness day 25th March and FND worldwide 13th April. Hopefully raising awareness and funding will drive our research and treatment forwards x

  • My next encounter with the trials will be in May but given no idea as to what is going to happen then. I don't think they have any idea how long a week is never mind two months when your whole life has been disrupted. Work review today and probably pay off as no where near ready to return and no answers to give them.

  • They have absolutely no idea how long and frustrating the time is. Can you send an email saying you were disappointed with the appointment and ask if there is anything else you can do? Sorry not much help. Easier said than done but don't let the work situation get to you. Focus on getting well, take a day at a time (or even less) and apply for whatever you are entitled to x

  • Ailsaw and kjkla85.

    I have been reading the interaction between you. I so appreciate the emotion and yet support to keep trying / searching.

    Both of you are lifelines for me. Ailsa, what you just went through is terrible. But to be told to stop asking why is so unprofessional for a person like Jon stone.

    He needs to be told your perspective of his thoughts and then he needs to be told how much wreckage he left behind in gutting your spirit which you now have to recover from. This is distressing for us all.

    We support you in any way possible to help you go forward. Ailsa, we can never stop asking "Why?". Never...

    Kjkla85, you are always there at the moment to catch one of us when someone tries to knock us back. Thank you time and again for being a true friend.

    My heart goes out to you both. I need to stew on this one because how you were treated is wrong. We have to stop that form of conveyance in it's tracks.

    We keep working. Much love.

    Dan / Seattle

  • Ailsa.

    This is a follow up to my earlier reply today. Sometimes I do not know if I help or hurt the situation, but at least now I have something other than anger to express at Jon stone.

    My thought is that our disease is not a self help disease. We can find little things here and there to make it sometimes more bearable but we don't have the cure because no one knows the cause or the cure.

    I thought it was very callous of jon stone to send you home with that in mind. We need help and we are asking for help and we are being incredibly patient for it.

    At some point, this message needs to sink in with medical providers. Based on your experience today, that is yet to be the case.

    Much love for things to improve.

    Dan / Seattle

  • Thank you for your support I am going to try and find the strength today to email Jon and tell him how I feel about our last meeting as carrying this inner anger and disappointment certainly will not help my recovery. I lost my job yesterday , we need all the help and encouragement we can get and I am so glad I have the support of fellow sufferers . I told him about this forum and he said not somewhere he would hang out , well maybe he needs to and would perhaps learn a thing or two as we are real people and we are the reality of the condition.

    Best wishes to you and hopefully better days ahead. X

    Ailsa

  • Ailsa.

    I am sorry to hear that you lost your job yesterday. Adding that event into the mix makes things harder. I know that too from experience. I am further disappointed in Jon stone's negative reference to our community. If he is not able to listen to others, then he will never understand the problem. He will not lead the way to answers for us.

    I stand in support of you Ailsa. Always.

    Your friend.

    Dan / Seattle

  • Thanks Dan , instead of letting my disappointment fester away in my head and perhaps have an impact on my progress , I plucked up the strength to email him today and explain how I feel about our meeting , hopefully I will receive a reply shortly and put my false expectations to rest !

    Wishing you a good day x

  • Ailsaw.

    Ailsa. You cheer me up with your ability to move forward. I am drained of all energy today due to low blood pressure numbers. But you have made me smile.

    Thank you from my heart.

    Dan / Seattle

  • Lots of healing hugs 🤗 my neck and left shoulder are bad today. I have an appointment with NHS neuro today and hope she can find an answer to my migraines and persistent right eye pain. Wishing you better days ahead x

  • Well the result was - Jon replied to my email within four hours and called me this morning. Unfortunately as usual funding is an issue and there is no magic treatment that will cure our condition . A big part of it is acceptance that it is a long road and there is no quick fix. I thanked him for taking the time to call me and as he pointed out he is just a dr and is learning like every one else. We must all stay positive and work together to find ways to manage and just having support and people to sound off to during bad times is a comfort . We just have to soldier on and lift each other up when we stumble of fall.

    Hugs to everyone x

  • Ailsaw.

    Ailsa.

    Hoping they can provide help to speed pain relief in the head, neck and shoulders. Those areas should be treatable now.

    I was a little encouraged that Jon stone contacted you. I do think he is right to say he is learning just like everyone else. A positive step maybe.

    Acceptance of this condition is a difficult issue for me only because everyone in medicine defines it uniquely. I have long since accepted the way I am because I know what that is. However, I bark loudly when someone tries to tell me to accept what they think I am.

    A reminder from a dear friend yesterday: " we as sufferers of this condition are the experts in the room."

    I cling to that belief but honestly, I want medicine to take charge and be the experts ..... something they have yet to produce the science to stand up for.

    I turn letter writing focus today to Mayo Clinic. I met a professional who while trained in psychology, she participates in active research in organic defects that are linked to changes in cognitive behavior and are found in known diseases. She is appreciative of our side of the story in this disease. I think it is worth a follow up.

    If we fall, then we fall together. For now I am holding onto the hands of my family which includes every one of you.

    Thanks for the encouragement. Will keep the search on.

    Dan / Seattle

  • Ailsaw,

    I am sorry that you, and others here, are not getting the help you need. I commend you for taking action by sending the email.

    Houseman,

    Sorry about your job. May you find something better!

  • Thanks 🙏 will let you know how it goes

  • Notinmyhead.

    Thank you for the support. Out of workforce for now as loss of leg mobility and the triad of movement disorder, severe weakness and speech problems make me a noncompetitive work candidate.

    Family carrying burden while I try to improve enough to compete again. About luckiest man alive. Do what I can for them with chores, support with their work and keeping house.

    It is always day to day. Think miracles.

    God bless you for the good thoughts. To a better day.

    Dan / Seattle

  • The sad part is that Dr Jon Stone is one of the top neuros in the world in this field. He gives really good lectures, he has a rehab team at the hospital where he is based. I'm surprised you weren't offered some rehab help from them...or are they so overbooked with patients that he can't offer their services to you? (perhaps a waiting list of more than a year???) I don't know.

    I have heard before that 'he has a lot to answer for', but I never got to the bottom of that. He has certainly given the medical profession world wide a lot to answer for, with the lectures he gives at conferences world wide. He has been a major driver of change and education about FND, and in fact, most of what we now know, compared to the extremely outdated ideas of, say, only 3 or 4 years ago, has been due to Dr Stone's work.

    I suspect that we now have an excellent team at our local Mater Hospital (in Brisbane, Australia, with Dr Alex Lehn) entirely due to Dr Stone's and Dr Hallett's lectures at a neurology conference in Sydney 18 months or so ago.

    However, it seems that no matter how good a doctor is at driving change at a global level, they still have to listen to patients one on one, and address each individual person's concerns, and perhaps that is his Achilles heel.

  • Jon phoned me today which is amazing as at least I now feel more like a person than a number. I am in no way trying to put down the good work he has already done. We are all in this together and I guess it is difficult on both sides as there are no set answers or clear cut treatments for our condition.

  • Hi Ailsaw, I too am waiting for a 2nd app after seeing and being diagnosed by professor Edwards last October, am still waiting as after emails and phone calls, I received a letter saying he thought I had been seen again. I have 1 appointment in April to see his specialist but have to attend another appointment but still don't know when. These 2 appointments I have to attend in London for them to decide wether they can help me or if like you they just say go home I'm too severe. Not sure how I will react to that, that's all I've been told by professionals for nearly 2 years. Their is no quality of life with this illness, no medication to help with pain, sleeping, loneliness, I could go on with more but until I try to get out I forget how much pain is involved in just going out. My daughter and baby came to see me yesterday, when he was born last September he got sepsis and was so ill in hospital. As her mum I was helpless to support her, just pictures of how ill he was, I've seen him since he was born 4 times and each time he cries my daughter grabs everything and runs away leaving me in agonising seizures (his cries and squealing are too high for me to cope with) if only professionals actually saw and realised how this destroys ours and our families lives they would just try to help. There are so many of us existing in an endless daily/nightly struggle to just keep going in the hope 1 day someone will help us. I'm sending you great big hugs 🤗 🤗🤗🤗🤗 and hope you find the will power to keep going. I know when I get sent some they do brighten my day. Kindest regards and wishes to you. Lisa-anne

  • It's a tough fight , stay strong and hopefully one day we will conquer this , lots of hugs 🤗 🤗🤗

  • Hello Ailsaw, That is not cool what so ever. I am so sorry he treated you that way, that is horrible. Really if these doctors had to go through the things that we do as patients with FND, they might change their mind and do what ever they can possible to get some type of a treatment. Yes the site is great and full of information, but it in no way provides treatment for us. Oh I am so sorry you have to go through this too. keep trying though. Don't give up until you do find the answers you are looking for. I have wanted to give up so many times, but somehow find the energy to keep going. To keep fighting, and to try and keep a smile on my face. Keep looking around for someone that cares more. That is willing to try anything to help you if he isn't. I wan't too terribly impressed when I heard him at the Conference in GA at the first of the month. These doctors there were more interested in what to call it, and who should be in charge of it vs how to help us. Yes they provided three people who have dealt with it, and some are still trying to deal with it, but they didn't see that side it seemed like. They saw that if they had certain therapies, or if they just accepted what they had that everything would be ok. Well I am sorry, I heard the diagnosis around 5 years ago, and have dealt with this for over 8 now, and they say the longer you have it, the harder it is to get over it. Well then why the heck aren't they coming up with something, and training people world wide instead of just a few places here and there. Don't they know that it is expensive to get to other places around the world yet pay for the travel, the doctors etc.. yet deal with the pain, the heart ache, the depression, the muscles doing what ever they want, when ever they want (embarrassment), the questions asked when you can't reply, the frustration..

    Sorry I could go on and on when it comes to these docs that say they know what to do, and don't help. It is so aggravating.

    I wish you the best. Don't give up. Keep searching and hopefully someone will listen to you.

    Cheryl

  • Just been to a mainstream neuro and she jumped on the psychological bandwagon and referred me to a psychologist. Jon replied saying that indicates my uncertainty of the fnd diagnosis. No wonder I'm confused , I'm relying on them for help . At least he is seeing the physical side of it but with so many conflicting attitudes and approaches no wonder I'm confused.

  • Hi I was originally seen by a neurologist who had no interest in my symptoms and basically told me to go away. A year later I was re referred as I was now having drop falls at home and broke bones. Again he messed me around for 6 months did nothing then passed me onto a younger neurologist who diagnosed FND. I was supposed to have an MRI but it never happened and I got taken off the neurology list. As I was told this comes and goes by the 2nd neurologist which has not been true for me, iv gotten so weak to the point I haven't worked in 3 years and am now having to get a cleaner in as I can't clean anymore and I'm obsessed with cleanliness. I emailed Jon stone and told him what happened as I believe he must know at least one of these neurologists and I am now on a waiting list to see him. I'm sorry you have had a bad experience and I will mention something to him about this site as I'm a health professional and did research and there are websites out there where people do give wrong information and it used to really frustrate me e.g. A known disease researched to death and has a definite and working care plan and people go on websites and suggest drinking tea instead of following the medical plan used to drive me crazy. It's like people who get Antibiotics then only take half. This website isn't the same. Also FND has no strong research, although I see Dr Stone has put websites out there, success stories, or clear plan for treatment and if you read this website as we all do everyone is saying the same thing. Maybe we all camp out somewhere and have a peaceful demonstration. Just kidding don't think we should have to go this far yet but I am going to be pushing for answers as I spent my life working and studying and I'm 40 and haven't worked for 3 years now and been told by two OT assessors that I will never work again. I was having bad brain fog on the 2nd day and couldn't hold a conversation, remember words when I prided my self on being articulate before and able to have intelligent conversation I feel like an idiot now, and I couldn't do the basic physical tests, I was actually told to stop half way through I was going so slow and getting it wrong. I have about 6 visits with the neurophysio but that's just to give me strength to walk around the house. I haven't cooked a decent meal in years and I would love to get back to work so I will be asking questions and mentioning this website. It is not possible for so many people from all walks of life with different reasons for getting FND to have the same symptoms. Are we supposed to as iv been told accept it then maybe one day we can be like the patients in the movie 'awakenings' literally not able to move or have a conversation then have some crazy docs experimenting? For me I have found the longer it goes the worse it gets. I just started with pain but was mobile the first year, then was having falls, now I have most of the symptoms but I'm not about to give in or up. I'm not a giver upper. We must fight this and they must listen. I also do believe that funding will play a large part as I trained with the NHS but went overseas to work and was shocked when I came back at the services that have gone or reduced so looking forward to meeting Jon Stone with an open mind. The last thing we can do if it is funding is write to our local MPs. I have already written to them on another NHS issue and waiting to hear back. I hope you have more success at your next appointment.

  • Hi thanks for your detailed reply. I couldn't believe the professionals attitude that seizures are not dangerous as like you if not supported when I freeze within minutes I would drop to the ground. I agree they are not life threatening in themselves but the consequences of having one can be, I have had a few really dangerous incidents that could have had some serious results. One remark was ' I have only had a patient break a wrist , eh well I will break his and ask if he considers that a trivial matter. They really have no idea what the dangers are living with this condition and being left on your own !

    Best wishes

    Ailsa

  • I had an idea recently with future technology we should be able to place the health professional who doesn't either believe you, care or understand your condition to live your life for a week maybe giving them the worst symptoms but then they go back to full health. Then say - how did that feel and how about living permanently like that? You look at space age movies and if I was a technician able to place an implant in someone's brain so they could experience what you do I would do it. Then maybe treatment would change.

  • Exactly , if only ,and I would quite happily invite one or all of them to stay with me for a week and see what it's like on a day to day basis.

  • Me too, maybe they could clean my house which has tumbleweed dust rolling around 😬

  • Lol 😆

  • I get so frustrated when I read people's stories and hear their frustrations about the lack of proper medical care for FND. I've been around FND Hope since Bridget first set up her first Facebook page, at least a year before she set up her incorporated charity.

    I have watched the changes happen. So much has already changed in such a short time. With world leaders like Dr Jon Stone in Edinburgh, Dr Hallet in London and Bridget in the US pushing them to do more research and working hard behind the scenes to spread the word in universities across the US (she often teaches the neurology and psychology teams in these US universities), things are lowly, oh so slowly, starting to change.

    There was a lot of publicity for us 3 years ago when the American Psychiatric Association changed the label for CD to FND, and introduced the new concept of Somatic Symptom Disorder (SSD). You will laugh with sadness that they created this new label to include any person who worries unnecessarily about a medical condition that they OR ANY OTHER PERSON might have, for more than 6 months...then included this disorder in the same category as FND. This covers mothers of children just diagnosed with diabetes who have to be watched like a hawk to keep their sugar levels steady! And it covers us too.

    Absolute ludicracy! There were thousands of doctors and specialists worldwide who joined forces screaming at the APA to remove this whole concept of Somatic Symptom Disorder due to it allowing lazy doctoring...with epilepsy, diabetes, cancers of all kinds. The doctors didn't even need to do any imaging to be able to diagnose SSD.

    So, since then, since the APA changed CD to FND and moved it from psychology to neurology, the neurologists have made huge strides. 3 years ago, no-one except perhaps 3 people worldwide knew that there are actually two tests that positively identify FND, without having to do CT scan and MRIs. Now Dr Stone has done so many public lectures and so many lectures at conferences and written about it so much, that now there are lots of neurologists who do these two tests routinely. Lots = some number that is definitely not large enough for patients world wide to be satisfied, but it's a lot more than 3 neuros.

    Unfortunately the ONLY treatment options until 3 years ago were CBT and perhaps some DBT. There were NO other treatment options other than individual doctors, rare physios and the occasional OTs who experimented on their patients, though unfortunately the experimentation was limited. For the 1 in 3 people with FND that the APA identified who did NOT have any psychological problems, psychologists didn't want to see them so they sent them back to neurologists, and the neurologists had been trained to believe that this was purely a psychological disorder and still used billing codes that reinforced this concept, so they sent their patients off to the Psychologists. So 1 in 3 people with FND became ping pong balls.

    Today, neurologists and psychologists now have a billing code that tells them that FND is a neurological condition, but there's barely 3 years of experimentation and research to discover any really treatments that work for more than a very small minority. But at least we are now being diagnosed properly by the neuros who have taken the time to keep their own knowledge up to date. No real treatment options yet, though Stone, Hallet, Dr Alex Lehn (in Australia) et al are working on that side of things. I know it's hard but we have to wait for the research wheels to start turning and gather momentum. 3 years ago, CD had been researched to death as a psychological problem. At least now things are slowly changing.

  • Yes very slowly , Antonella benvenga , Italian neurologist at a NHS hospital in Scotland hasn't a clue about fnd and has referred me to a psychologist even after reading a report from Jon stone that I have fnd. I kept my appointment with her as wanted to discuss my migraines and eye pain in more detail. She said nothing she could do for me and a psychologist would help , it's shocking and disturbing that there is such conflicting attitudes and information, who is right ? I feel even more confused and not that surprising that I don't have any faith or trust in the medical profession .

  • Sadly Vivienne it seems the move to classify many conditions under Psychosomatic Disorders is affecting many conditions. It's something we continually battle with regard to my main condition, ME.

    I was interested in your comment about the two tests though. Can you tell me what they are or where I can find out more about them. I'm still not convinced about my diagnosis and would like to understand more.

    Thank, Margaret.xxx

  • Also Iv had recent hospital admissions for medical issues, non related and even though iv mentioned FND iv seen that it has not become part of a care plan like an elderly person who has falls would have in their notes so that staff can beware of potential issues. What would They do if someone fell and really hurt themselves or had a seizure. Would they treat them as epileptic and medicate them that way as they know no better. Iv experienced first hand in a short period staff who know nothing of this an on PhD occasion when I was having complete spasm to all limbs made to walk a long distance and discharged. I think if a neurologist can't be bothered to keep up to date with FND current thinking then they should have a pay cut as they are harming rather than helping

  • Yes I know what you mean , I have had awful and very distressing experiences of paramedics and A&E departments especially my local hospital in Kirkcaldy in Fife where I live.

  • The best thing to do is find a passion for a hobby or adaptive sports is better. You have to keep moving even though it is harder then hell. Check out "The Hidden World of FND" and go to road to korea2018 on facebook. I have been dealing with since 2010. for 6 years undiagnosed. When I was diagnosed there was relief but only for a short time. When you have an incurable situation like we have , never give up everyday I have to deal with a body that does not work correctly and we are the only ones that understand. I have drs that told me I am on my final pathway, nothing To do but fight till the end but that is very difficult to deal with.

  • Strangely enough I took up a hobby of stone painting and I have never been arty in the past but created quite a few really good pieces , if I do say so myself. Perhaps a different part of my brain had become active as other parts have shut down . My neighbour is recovering from serious brain surgery , he had a large tumour and the scan showed how his brain had redirected arteries around the tumour in order to survive. It is an incredible organ and one we will perhaps never fully understand !

  • As I read this post....I am disheartened at all you have endured. Everyone here feels your pain. I'm a newbie, but I just cannot imagine How much this has impacted you. And to have the doctor dismiss you in such a way is totally against all that he preaches. A stigma that we all must learn to live with....but to offer no support, treatment or ignore that organic issues still need to be monitored in all patients....since, I agree with many here.

    Organic issues can cause functional. It is the way your brain adapts to all the stress an organic disease puts on your body. At least that is what my neurologist likes to tell me. We are agreeing to disagree. I told him I can understand how he has come up with this working diagnosis... but I cannot do more that that...told him to give me a break. I also told him that my belief is not what guides my infestment in getting better. I work with children...we treat the symptoms and not the label...I can believe in the PT since I can see that I'm needing help with my gait! The rest...we shall see how this develops.

    My primary doctor told me that yes this is a bit much to take on...but it is understandable since my body has been stressed due to all the heath issues. That I might not be stressed but my body sure is. This was her way to help me deal with a trial on meds....which started the 2 months of GI hell....but hey that is for another night....she is trying and I appreciate her honesty. She I think is struggling on just how to help me and that I am blessed to have. She still runs tests when she feels they are needed. we do not always agree, but I'm glad that she is in my corner. She has gone against the specialist to run many of those tests...which some come back positive. I loved when they tried to initially group all and relate it to stress...and she backed me & told me she gets what they are saying, but stress doesn't make your esophagus stop working...and my test proved that. Well 50% is not and another 25% is weak and slow....but hey this body still works 25%...could be better odds but for now I will take it.

    The point is.....i think we all have the right to advocate for our health and quality of life. And no doctor shou,d ever ignore symptoms...

    I wish we all could have that support, but sadly we do not. Which make it that much more upsetting to have a neurologist top in his field behave as poorly as he would fight for others not to. Seriously 😳

    Please try and remember we have no control over what our brain does....I tell my friends that my body has gone all rogue on me....another thought to remember, even if this was MS or some other acceptable diagnosis or disease....it would still be "all in our heads" since after all it is the brain which is located in our heads that runs our bodies. That was another funny my neurologist told me. I wanted to tell him very funny! But I was still trying to process all that has been thrown at me.

    I'm sorry again for all that you have been through....I'm truly at a loss for words...that a doctor could ever rule out a possible organic issue. For many here we are all zebras and the doctors will have to learn and grow to help us build our own colorful corals! Right? Rare is a word ....perhaps we just need to send a few doctors a dictionary!

    Sending positive thoughts for all!!

    Patti

  • Hi Patti

    I hope today is a better one for you. I guess we will never have all the answers but I have certainly lost all confidence and trust in doctors etc. Six weeks until my neuropsychiatrist appointment , I know there is no magic cure and I am making some good progress. I know my central nervous system has been shot to hell and I just want to know how to fix it. I seem to have my meds at a good level to keep things under control but worried about long term consequences.

    Lots of hugs 🤗

    Ailsa x

  • Ailsa, I am okay today. Thank you for asking. I still have good days and some not so good days. But like I said, I do not have control of my body.....😳

    I did not have much luck with meds...was on Zoloft for 2 months...forced on me from my pulmonary and neurology team. Actually got worse...so I'm in PT now.

    My neurologist just ordered my PT to be increased since the 2x a week is not helping. extensive PT is not going to be easy and I'm not sure my heart and lungs will cooperate. But hey one has to do what they have to. His new orders read..." functional gait disorder with significant imbalance" adding with significant disability, requesting daily PT with stating I would benefit from a minimum of 4-5 sessions per week for 6-8 weeks. Oh my ...😳

    I will not go on meds...not after the experience I had with Zoloft, but I do believe PT will help improve my issues. If not just to work on increasing my strength and tolerance.

    .with all my health issues, it sure has the feeling that I am on a rollercoaster filled with so many turns and tracks..but man I hate those bumps...this to me is another bump. But hey it's never boring right?

  • I had to ask for physio referral and told 4 month waiting list . I told dr stone of my concern not just due to gait problem but the fact that after being active and now totally imobile for seven months there is a knock on effect to the whole of my body not just legs. They just don't seem to see the 'whole' picture . X

  • I feel the same! I saw prof Edwards in Jan this year.. 2 hr drive... his staff forgot to sign me ... so after 2 hr wait I saw him... explained all my 11 symptoms... he just look at me and said "yes it's the FND", let see if the neuropsychologist team can give you cbt if your not able to access locally (that would mean 2hr each way trip to London) and request another brain MRI (my 4th one, fist two where in NY) to make sure they've not missed anything. That was it.. I'm guessing I'm not bad enough to get any physio just have to make my own personal changes to cope. On fluoxetine now, started yesterday and go to say still struggled to get off to sleep still but the jerks either didn't happen or I slept through them! So not on it today as we're doing it slowly as last ssri I lost my mojo and sat in sofa for 6 weeks till I stopped taking it! So I think they are stuck... there's lots of us now and they are not just treating fnd patients and at what point do they say "yes physio for you, cbt for you, hospital intensive for you", ? I don't know....so I'm thinking .... if this was an inoperable brain tumor what would I do???

    1: reduce stress

    2: live each day like my last

    3: tell my family how much I love them and how proud I am

    4: enjoy the birds singing each morning

    5: get some help to do the non important things in life like housework , shopping

    6: do things that make myself and others happy

    7: if you can't change it then accept and move on

    8: laugh... it changes you... it increases happy hormones .. it changes others ... proof the twin boys giggling at each other on you tube if you've not seen it then you should!!

    9: don't isolate your self , go for a coffee, if you can't get out then Skype or FaceTime a Freind and have a coffee and a laugh

    10: start again the next day!

    Well I'm a great ideas person... let's see if I can maybe follow this!!

    Hugs been up since 7am...? Now on the school run hugs xxx

  • I love your list of top 10 things. Especially love #8. Love live and laugh...best medicine. I also love your advise in #7. Accept the things you can not control (like the attitude & stigma we face) and focus on what we can do...live our lives the best we can. We are all a special type of zebra. And medicine is not an exact science....so while we wait for medicine to catch up, we can only do what we can to make our lives as full as they can be....which is what anyone with an organic disease does. We are all the same but yet different. You know?

  • Think I have been through the worst now and trying like you say to make the most of each day and every little step forward. We need to be good to ourselves and acknowledge even the smallest improvement or achievement. It's a tough road and I have just lost my job , trying to stay focused and try not to dwell on the past or look to much to the future. Mindfulness helps me to stay focused in the present .

    Best wishes

    Ailsa

  • Hi alisa, I'm just passing on my customers to my team members. I need to stop , step back and decide what's healthy for me to continue to do and what is important! I will miss my customers as I've build relationships but I have sent out to me team who's going to take on what customers!!! Now to just write cards to let my customers know I'm taking a break to get better... on second dump run! I've cleared the greenhouse and shed! Got the shakes now as I've done too much . When done I need to shower and change ready for school meeting!! It's ok I think... I've made the desitiin so just to write it all up!! In fact I will probably had over this months £300 orders. Saves me doing deliveries and having the stuff in my house!

  • It's so difficult to give up what you normally do but sometimes we just have to take a break as if you keep pushing to hard recovery can take longer , I'm learning to pace myself , not easy as I'm very independent but I don't want to go back to the place I have been - hell and back! I sat on my mums couch in a constant state of disassociation unable to walk etc couldn't dress myself or sit at the table to eat. Every day wondering if I would ever return and be me again , I felt like a puppet on a string when I walked and as though I was on the outside looking in. Glad to say better days are here , not ideal or normal by no means but at least I am now back on this planet! Baby steps x

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